I do not have PTSD, but I am have been fortunate and have good encounters with all my doctors.

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Senior Member

[Note: I have this myself, which was from a horrendous encounter with a physician, early in my illness. I also have a good friend who is much worse than I am, so this is very real.]

""I've had patients who met post-traumatic stress disorder criteria . . . where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD." - Nancy Klimas, M.D., Miami Herald, March 24, 2009"

greybeh

Guest

I didn't vote. I think I'd be borderline. I never chewed any doctors out, I just left.

Had a particularly rough time with one doctor who claimed to be treating me for fibromyalgia but then started saying ambiguous things about depression, and started limiting my fibromyalgia treatment options in favor of drugs that treat depression. Eventually, I said, "If I refuse treatment for depression, will you treat me for fibromyalgia?"

Yes, he said, but "his lawyers" would want me to be taking anti-depressants. This was after he burst into the room, telling me that I was "manipulative" for having my therapist call him (she offered, after the last appointment where he told me that I was DEPRESSED and he wanted me to tell my therapist that she was doing a bad job and that I needed a new therapist.)

I asked my therapist how the phone conversation went. She said he wouldn't let her get a word in edgewise, that I was depressed, should just admit it and then I'd have some "great epiphany" and start getting better.

Finding I was spending more time talking about how to handle communicating to my doctor than actually getting help with coping with having a life-changing illness, I decided to find a new doctor. The doctor that was giving me all kinds of problems told me that I was "lucky to have him, because most doctors won't even bother with fibromyalgia patients!" I'm glad I decided to prove him wrong. I have a doctor who really DOES seem genuinely interested and helpful and professional, now.

When I stopped therapy (not long after finding a new doctor), my therapist told me, "I think it was really good for you that you stopped seeing that doctor..."

Doctors have done more damage than good. Before I had my diagnosis, I had a rheumatologist who wrote in my records that I had fibromyalgia, but allowed me to believe I just had osteoarthritis. He wrote to my PCP(s)... I returned to my old PCP who had been out after shoulder surgery. He should have had the letter from the rheumy.

He told me I was depressed. When I insisted that I didn't feel I was depressed, he told me I "wasn't his patient" and hurried me out the door, telling me to go back to his colleague (who I'd seen for the months he was out after his operation).

His colleague was abrasive about my "little list" that I had with me (poor memory), shoved anti-depressant scripts into my hand, and then shuttled me out the door angrily.

This was prior to my diagnosis. I experienced self-doubt, fear, frustration, anger and felt very abandoned by the medical community. I wanted to get better, and I was in so much pain and so tired that going to work was torturous. A job I previously loved, I felt incompetent and insecure because my cognitive abilities were slipping away and I was on the border of physical collapse.

I did become depressed, had suicidal thoughts. I called it "doctor-assisted depression."

Years later, I have a diagnoses, I have a good doctor, I have developed coping skills and knowledge about my illness. I set do-able, modest goals, pace myself, listen to my body...

I could have been at this stage a whole lot earlier, and it wouldn't have had the extra obstacle of dealing with the emotions associated with being rejected by the doctors I entrusted with my health and well-being.

Senior Member

Thank you for this poll! How wonderful that an actual doctor acknowledges it. I'm sure we all have our horror stories, and greybeh, it's been a long road for most of us (next year=big 2 -0 for me!). Here's my concern: I took anti-depressants for depression I didn't have & it jacked up my noggin, not to mention my liver/kidneys. More importantly, this is what I came away from at my Mayo Clinic appointment: mainstream medicine still believes this is all in our heads & my biggest fear is that it will be used against me in a court of law. Paranoid? Perhaps, but just a few months ago, the Mayo Clinic physician (ties for meanest person ever, not just mean physician) told me my increase in horrible physical problems was due to the fact that I stopped drinking coffee & stopped taking zoloft. The first q he asked me in his office was, "Have you ever been treated for depression?" like a really fabulous lawyer. Passive verb choice, nothing about how I felt, only about how another physician thought of me. I had taken it for 10 years, so every chart describes me inaccurately, as depressed. The Occum's razor never got sharpened beyond that point. I worry that one day, I'll be taken to court for something I haven't done, & someone will pull out 10 years of medical records. How horrible that most of us have had suicidal thoughts. Mine thoughts drift to fantasies of storming in to offices, screaming the f word & running away. Not so effective in getting anyone to take me seriously. But weirdly satisfying. A girl can always dream.

cold_taste_of_tears

Guest

I was held in a psych ward when bed-ridden with cardiac problems. I was so desperate from being neglected for months in hospital, I ticked the box 'suicidal' on a form patients were given when entering the 'unit'.

They ignored it. This is how much you're hated by 'specialists' in ME CFS in the government in the UK, probably because of the way they're trained.

Retired account

I picked the last option. The only problem I ever had worth mentioning was with my first PCP (I just switched to him from a pediatric as I had just turned 18) who insisted I had depression. I knew otherwise but gave up trying to convince him after the first appointment. Why waste mine or his time? Switched immediately to a new PCP who never doubted or gave up trying to figure out what was wrong with me.

I also saw a handful of psych people and they were... useless, at best. Never stuck with any of them past a second appointment.

I did, however, see many specialists (gastro, neuro, endo, etc.) before I eventually saw and was consequently diagnosed by David Bell, and they were all really supportive. (And I of course don't have enough good things to say about Dr.Bell.) Even the docs I saw on the numerous occasions I went to the hospital, while unable to do anything for me, were at least understanding of situation, to a reasonable degree.

I suppose the last option doesn't quite adequately describe my experience, as I have had my share of "run-ins" with crappy docs, but overall I feel I have been very fortunate.

The bad experiences I did have were eye-opening, and perspective changing, rather than emotional distressing (at least in the long term.)

Senior Member

I went to Dr. Pierotti of the Pittsburgh Fibro and Fatigue Center. After 3 visits in two months, I left with a drug induced heart attack caused by him. This has been verified by Dr. Cheney.He gave medications in an inappropriate manner , which put me in hyperthyroidism, because he did not increase them in a slow deliberate manner as the body tolerated. I am now in cardiac heart failure, with considerable damage to my heart. I do not have PTSD, that I know of, but I am certaily disabled because of this doctor. He knew very little about CFS/ME. He was a disgrace to the profession and certainly was no expert, even though the F&F Centers advertise that they have experts. He misdiagnosed me and didn't even realize I had CFS. This was even after I detailed my illness in 24 pages of questions and answers. If you need more information concerning this event, please go to my post in the treatment section of this site. It is entitled " Heart Attack by CFS Treatment" Most likely the only reason I don't have PTSD is because Dr. Cheney validated what happened to me. He was even willing to stand up for me in a court of law. Having him beside me helped and most likely stayed the PTSD. Dr. Pierotti certainly humiliated me, betrayed confidences to his staff, as they called me a malingerer , and was my worst nightmare. All this because he was in error for not properly diagnosing me. If that wasn't enough to give me PTSD, I don't know what else could possibly be worse. Then to top it off Dr. Teitelbaum tells me how sorry he is that I have been through so much. Yes, I have been through so much because of his F&F Centers, as I was getting well before going to them. Being called a malingerer by a CFS specialist was the worst trauma that could possibly happen to a person that is sick with CFS.They are supposed to know better and understand. My only problem was that I was too intelligent for him. BTW, Dr. Cheney has diagnosed me as having CFS. Try and top that one...... A CFS expert telling you that you are a malingerer. Can you only imagine what I went through when that happened!!!!!

Senior Member

Just voting on this, and thinking about it made me sweat, feel breathless and nauseous and dizzy.

My first experience with getting dx'd was appauling, the reuhmatolgist couldn't have been more ignorant arrogant and patronising if he had been called G.W. Bush.

The nurse concerned was rude to both myself and my partner from the moment I said I have MCS and FM. She was so spiteful, that when she took my bloods which ordinarily does not hurt, this time the needle hurt going in, and comming out.

After this all my intereactions with my local surgery has gone down hill. I can no longer get antibiotics or steroids, or indeed help with allergic asthma.

If the oportunity presented itself I would cause the perpatrator to suffer, and that thought makes me feel calmer and better.

Even to the dergree that my request to see a genetic counselor recently was rejected out of hand by the 1 GP I still trusted. The next day she changed her mind and granted it after my partner explaining things.

The point here is it's my right to see a genetic counselor if I have any concerns about any memebr of my family havng a gentic illness.

I was in tears, I kept questioning my sanity, I couldn't rationalise why I was being deinied basic rights. I couldn't sleep at all.
When she changed her mind I felt such gratitude and relief. After a nights sleep I woke up asbolutley furious that I can be played with so easily on a whim, because I have an FM MCS dx.

George

Guest

There was the first doctor who after enjoying the benefits of my double insurance and very high salary, diagnosed me with a tumor of the pancreas. He then refused to biopsy the tumor to find out if it was cancerous or not. His statement to me. . .

"Don't worry it is not cancerous you are much too healthy and if it is then you will be dead in 6 months and it won't matter anyway."​

I chewed his leg off and picked my teeth with his toe bones. (snicker) I did tell him that was about the stupidest thing that had ever come out of his mouth. That knowing you only have 6 months to live lets you get your affairs in order. Not knowing would leave a big mess for everybody else to clean up. Thank you very much and have my records ready to go tomorrow.

The pancreatic tumor doctor explained that tumor was cancerous but very slow growing. He didn't deal with this type of tumor. He was much to cool, he only dealt with really sick patients who were dieing. I would need to find some one else to deal with the potential problems down the road.

I asked him for a copy of all the $10,000 worth of test I had done. When he left the office I walked over to his computer, pulled up his browser, typed in "hard core killer porn babies" and then clicked on every single link on the first two pages. Then I minimized the browser. Walked out collected my chart and left. I hope he had good virus protection on his computer. (no grins I was pissed!)

The third doctor sent me to a fourth doctor who actually ended up making the CFS diagnosis. The third doctor told me while I was in the middle of a massive EBV flair (titers were 5103, anything over 150 is considered positive (grins)) That I was hysterical and depressed and I needed to see a good psychiatrist. I told her ". . . you have got to be the stupidest bitch alive if you can't see half my face is hanging on the floor. You call that indicative of depression? F*^k yeah I'm hysterical I have you for a doctor". (I thought it was a stroke because of the paralysis and the face sagging turns out it was bells palsy)

I went to see doctor four and he gave me the diagnosis of CFS based on the EBV titers. Yet another uniformed idiot who at least got it right.

I went to see doctor number 5 because I thought the CFS diagnosis was a crock. If nobody else believed in CFS how was I suppose to believe in it?Turns out he didn't belive in CFS either. He ran a few more test, this was about a year later, he came to the conclusion that I do have CFS probably, maybe, but the important thing to him was that we treat what we can.

Since I can't drive more than a few miles anymore I'm stuck with him. Good news is I've learned a lot about CFS in the last couple of years. Bad news is I rarely go to the doctor anymore. I don't feel like trying to educated the chronically stupid. Rip the labels off of doctors, lawyers and others of supposed authority you find people. Some are caring, some are respectful and some are egotistical wieners who can cause PTSD!

Senior Member

Senior Member

I was doing fairly well. I could only walk a few steps, was housebound, but I was coming to terms with life. I had got benefits which made life easier and I was going to a disability centre once a week where they didn't ask what you had just what you could do.

Then I was taken into hospital for two weeks. I was treated horrendously. I ended up lying on the floor in the corridor for two hours during the night. They wouldn't wheel me to the toilet so I had to wait for visiting hours to go. They then sent in a report that got my benefits stopped - oh and the consultant stopped my pills without telling me.

Most of the staff were horrendous (some were kind). My coproxomal painkillers went missing twice which makes you wonder as they were the only ones with a street value.

The worst thing, though was I caved in. I had always thought I was strong and I felt humiliated by my own reaction. A lot of the abuse was looks and emphasis in speech "Oh, you can't so that", nothing you could accuse but it made me feel awful. My pills were left where I couldn't reach them - they didn't believe I couldn't of course. The lights went on suddenly one morning when I was looking straight at them so I was blinded for hours. A doctor wouldn't come to see me.

I was told that seriously ill patients were having to go without help while I caused a fuss.

It took years before I could think about it and I get panicky at going to see a doctor even when I know it won't be like that. I have a referral to an eye consultant and I know I will be so anxious it will make it hard to think - with that being a problem anyway :Retro smile:

Senior Member

I have had too many traumatic experiences to write about. But one in particular, I will. A few years back I was on elavil for my fibro pain and lack of sleep. I became hyper and manic on it. I had never been like that before. My CFS doc. who I loved, thought I was bipolar due to the mania from the med. When I explained that I had never been like that before, he insisted I be treated for mania. He put me on lithium, sent me to a psychiatrist who put me on Zyprexa (the worst drug on the planet) and I was also on lamictal. After one month, I was in a stupor. I would sleep for 12 hours and it felt like I slept for an hour. I became suicidal. After 7 months of hell on these drugs, I went off of them. I tried going down slowly, but when I stopped the Zyprexa, I went nuts. I had major withdrawl, vomitting, I could not sleep, my heart was bouncing all over. It took me over a year after going off of those meds to straighten out. The doctor never apologized, nothing. Ever since then I don't have faith in him anymore, and I am scared to go to new doctors. I was never bipolar or manic until Elavil. I went to a shrink who said I was not bipolar but the elavil was what tripped me into a bad state. The fact is, I felt like I was living in a funhouse when this was going on. I was just so sick.

Over the years, I have lost hope due to all of the many things that doctors have done wrong. I too was in a psych ward in the beginning because they didn't believe in CFS back in 1990. I think this illness causes PTSD. Many thing childhoods cause it; not so much. I had a nice childhood. It wasn't until I got sick that everything went crazy.

Senior Member

When he left the office I walked over to his computer, pulled up his browser, typed in "hard core killer porn babies" and then clicked on every single link on the first two pages. Then I minimized the browser. Walked out collected my chart and left. I hope he had good virus protection on his computer. (no grins I was pissed!)

I'm sorry, but this has got to be the funniest thing I've ever read. I've had so many bad experiences with doctors, so many in these 25+ years, so many who went out of their way to write to my PCP, for instance, to chew him out for "encouraging" me in my "illness beliefs." I've lost friends, a first husband, family- and I've tried so hard to refrain from wishing this disease on any of them. I had an ER doctor, while I was having one of my weird "shaking" seizures, grab my arm like he was going to continue to neuro exam, pull me from the table, and tell me, "We have SICK people here!" He then told my first husband, who left me shortly afterwards, that what I needed was a "good spanking more often." I left the ER in tears and cried the entire 2 hour drive home. Yes! 2 hours I went to be treated like this. And this isn't even close to the worst I've been treated. This after another neuro had already diagnosed me with temporal lobe seizures every 7 seconds just a month before.

Robbo

I love your attitude, it's fantastic. Good on you for pointing out to the doctor the obvious: I'm depressed because I have an idiot for a doctor! It's a classic catch-22 situation, and the longer one protests one's sanity, the more one confirms one's insanity to the torturer/doctor.

I had a three hour nap (hard to do duing a panic attack), and woke up with a rapid heart rate. I went to the emergency room, where I was subsequently diagnosed with tachycardia (cause unknown). They all agreed that I didn't look particularly anxious at all and was not having a panic attack, but had an issue with my heart. As they treat the severely mentally ill every day, who are generally having panic attacks when they arrive, I think Emergency staff are pretty qualified to know. The point is, the doctor would not have accused me of having a panic attack, unless I told her I have CFS. I live in eternal hope I will find a doctor who is scientifically minded and doesn't wallow in their own prejudices, but I suspect that's an empty dream...

EFT (emotional freedom technique) is very helpful for trauma issues like these. After you work on the issue, you'll remember that it occurred, but it just won't bother you anymore. It's also very fast working - you could have this issue zapped within a few minutes.